Paperwork

So much paperwork, at home and at work.  Forms for this, forms for that.  Online forms, paper forms.  All so confusing and so much to keep track of.  Now imagine how much more difficult keeping track of paperwork, or following up on paperwork can be when your husband has RSD, you work full time, have a 3 year old and you were evicted from you home 3 months ago and all your stuff is packed up and you have no clue where to start locating it.  If you are filing for disability or receiving disability, the paperwork intensifies.  The lack of following up or following through on this paperwork is costing me and my family money.  So you think it would be our top priority.  It is, but our life is different and as I tell my friends when they call me to get together, my life works on “last minute”.  I get more things done, see more people, last minute, than planning ahead.  Because my plans will always get jacked up because of our situation.  But with paperwork, you can’t work on last minute.  You need to get it done.  And it comes back to where do I begin looking for all the info I need to fill out this paperwork.  Then I get overwhelmed, stressed and my defense mechanism of avoidance comes into play.  I avoid unpleasant things, thinking I am saving myself grief.  But in the end, I cause myself more grief.  Vicious circle.

Then you have RSD.  With Kevin’s RSD, you don’t know when he will have a good day or a bad day.  So you can’t plan.  When he is able to do something, you have to drop what you are doing and do something with him or you will lose that opportunity and you don’t know when you will get the opportunity again.  Sometimes I don’t want to or feel like dropping what I am doing and it frustrates me when I have to and I take it out on Kevin and I don’t mean to.  So in regards to all this paperwork that needs to get taken care of and which I need Kevin’s help in doing, because the VA won’t deal with the spouse only the veteran themselves, I have to catch that opportunity.  But when Kevin feels good, I don’t want to waste that time doing something unpleasant I want to enjoy the time and have fun with him.  So paperwork doesn’t get done.  And money is delayed or lost.

I know don’t look at all of it at once, knock one thing out at a time.  Well then a phone call needs to be made on something and you have to wait for a response and something else comes up.  Or you can’t find or don’t have the info needed and you have to order it or call someone for it and wait again.  Because of our living situation we are completely disorganized and everything takes so much more time to get even one thing knocked off.  And we don’t have that luxury of time when it comes to getting money.

Kevin has enough to deal with daily without me nagging him about making these phone calls or filling out that form or calling for that information.  Like I said before, if he gets a few minutes of pain relief out of hell day, I don’t want to rob him of the enjoyment of those minutes to do paperwork.  It is almost like we need to hire someone or me not work to get all that needs to get done.  So I am left overwhelmed with all this paperwork.

Strong and Gentle

I have this Daily Spiritual Refreshment for Women Journal and the subject for today is Strong and Gentle.

Let your gentleness be evident to all.

The Lord is near.

Philippians 4:5

And the thought for today after the passage is as follows:

“The Bible says that the strong woman is also gentle—two words that might seem contradictory.  But they aren’t.  The strong woman chooses how she will respond to others.  She chooses to deal with them gently—because she can.  She is in control of her emotions, her words, and her actions.  Anger, hostility—both represent the easy way out.  But gentleness requires strength.  God wants to see you become a strong, gentle woman for Him.”

For Lent this year, I decided not to give up anything, but do something instead.  So many times I give up something and I just fall off the wagon.  Give up swearing or sweets or coffee, whatever.  Never fails, I will do, eat or drink whatever I gave up without even thinking about it.  So this year, I decided to pray every day.  I have to think about it.  And I have my prayer books at work on my desk to remind me to start my day off with prayer and a bible by my bedside to remind me to pray before going to bed. 

It is amazing how much benefit I have gotten from these daily prayers.  Last Sunday our priest mentioned in his homily that we need to do “preemptive prayer”.  Pray before we get into situations that would let the devil in (like bad thoughts, actions, anger etc).  I laughed about it afterward, that I would end up praying 24/7 if that was the case.  The joke was on me, because this preemptive prayer is helping me and I didn’t have to do it 24/7.  Just adding prayer into my daily life, brought a strength and calmness about me.  Sure, I can still be a ball of stress and tension, but I seemed to be handling things a lot better.  Thinking before acting.  People in my life are no longer an after thought, instead I think of how my words, and actions can affect them before saying or doing.

So by doing my Lenten promise, I am letting my “gentleness be evident to all”.  Or trying to at least.   I am trying not to take the easy way out with anger and hostility. 

In doing something for Lent, I ended up giving up something.  I gave up my worry, and stress.

Being a wife of and RSD sufferer and a mother of a 3 year old, I need to have a lot of strength and I need to be gentle too.  I need to reach in for that inner strength and to be reminded to do so through prayer has been helpful to me. I am finding my sprititual life has been imperative to my survival.

Prayer

I asked God for strength,

that I might achieve...

I was made weak,

that I might learn humbly to obey.

I asked for health,

that I might do greater things....

I was given infirmity,

that I might do better things.

I asked for riches,

that I might be happy....

I was given poverty,

that I might be wise.

I asked for power,

that I might have the praise of people...

I was given weakness,

that I might feel the need of God.

I asked for all things,

that I might enjoy life...

I was give life,

that I might enjoy all things.

I got nothing that I asked for,

but everything I hoped for.

Almost despite myself,

my unspoken prayers were answered.

I am, among all people, most richly blessed!!!

Anonymous

Birthdays - Are they just another day, marking just another year went by?

When birthdays roll around I think in years.  How old was I when I did that?  How many years ago did I hear that song?  How many years has it been since I have done that?

My birthday is coming up this Tuesday I am thinking once again in years.

For 38 years I didn’t have a care in the world but myself.  Then I met Kevin, got married, became a step mom (which including dealing with Kevin’s ex-wife), to becoming a mother to my own child Lincoln.  Then I became the wife of a disabled husband, to losing our home and living with Kevin’s mom all in six short years.  I don’t catch my breath from one thing happening before another thing does.  I am struggling with all the life changes.  I am not even accustom to one change and another one comes along.  Maybe it is a mid life crisis, I will be turning 44 on Tuesday, or just overwhelming stress lately, but I am really having a difficult time dealing.  So much so, that I think I need some professional help to get through it all.  My once a month glass of wine has gone to a bottle a week.  Just this past Wednesday, I was so agitated and felt like I was going to jump out of my skin, that I had thoughts of just bailing, running away.  I squashed those thoughts by looking at Lincoln playing with his Legos and Kevin writing in his journal which made realized how lucky I am to have them and there is no way I was going anywhere.

Sometimes you can handle all that is thrown at you and other times you can’t.  Maybe because work has been extremely stressful this week, that it has carried over into my home life.  Threats of state budget cuts to human services means turmoil at work, since I work for a human service company.

Then there is the stress of Kevin’s SSDI hearing on Thursday.  That worry that it will not go our way, even though our lawyer says it will.  If it doesn’t, it means just that much longer we have to live with Kevin’s mom.  I hate that thought.  I am miserable there.  I spend my evenings trying to keep Lincoln from bothering Kevin’s mom and her husband.  So I can never relax.  How can you keep a grandson from his grandmother, whom he can run to all day long?  Lincoln can’t switch it off when mom gets home.  Not to mention “sexy time” is non-existent.   Kevin blogged about his frustrations this week in The Rant Post: From the Shadows Link: http://therant-kmshear.blogspot.com/2011/02/from-shadows.html and I totally concur with it all so I am not going to rehash it here.

My birthday.  Just another day.  I don’t think so.  It is a very special day to me.  My special day.  I want some kind of fanfare over it.  No matter how small.  With Kevin and his RSD, you can’t plan anything.  You just don’t know how he will feel that day.  Though I WILL be going out on my birthday this year.  Kevin’s mom planned a bible study group at her house that night.  Yes I was welcomed to join, but not interested.  So I either hole up in the bedroom or I spend the evening out of the house.

Speaking of Kevin, today he had an appt with his primary care and he will be coming home with all new meds.  Hoping this cocktail will give him some relief no matter how short lived it may be.

Back to the question, how many years ago did I hear that song?  I heard Alanis Morissette’s song “Hand In My Pocket” this week and it conjured up all these memories, but it also made me listen to the lyrics differently, because I am in a different place today then I was when the song first came out.

“Hand In My Pocket"

I'm broke but I'm happy
I'm poor but I'm kind
I'm short but I'm healthy, yeah
I'm high but I'm grounded
I'm sane but I'm overwhelmed
I'm lost but I'm hopeful baby
What it all comes down to
Is that everything's gonna be fine fine fine
'cause I've got one hand in my pocket
And the other one is giving a high five
I feel drunk but I'm sober
I'm young and I'm underpaid
I'm tired but I'm working, yeah
I care but I'm restless
I'm here but I'm really gone
I'm wrong and I'm sorry baby

What it all comes down to
Is that everything's gonna be quite alright
'cause I've got one hand in my pocket
And the other one is flicking a cigarette
And what it all comes down to
Is that I haven't got it all figured out just yet
'cause I've got one hand in my pocket
And the other one is giving the peace sign
I'm free but I'm focused
I'm green but I'm wise
I'm hard but I'm friendly baby
I'm sad but I'm laughing
I'm brave but I'm chickenshit
I'm sick but I'm pretty baby

And what it all boils down to
Is that no one's really got it figured out just yet
'cause I've got one hand in my pocket
And the other one is playing the piano
And what it all comes down to my friends
Is that everything's just fine fine fine
'cause I've got one hand in my pocket
And the other one is hailing a taxi cab

Someone in need. Please read.

You have a kid. So, now what?: Another Letter...: "I wrote a more comprehensive letter. I was exhausted and worried when I wrote the first letter. I also have a plan. But, we need the help of..."

Guilt

Why does everything I do or get make me feel guilty?

This weekend I am going back to my hometown of Dubuque Iowa to spend time with family and friends and I feel guilty for leaving Kevin home alone.  I wish he could come too, but know the trip, which is a short 2-1/2 hrs away, would be a killer for him.  Then, I feel guilty that I am relieved he isn’t going, because I don’t have to worry about him or make sure he is comfortable at my mom’s (which is impossible on her furniture even for a healthy pain free person) or entertained there (my family can be boring, we are content just sitting in the same room not saying anything to each other).  I mention my guilt to friends and they tell me I am crazy to feel guilty, because I “deserve the break”.  Then I feel guilty that I CAN get a break and Kevin can’t because of his RSD.  Guilt, guilt, guilt. Ugh.

Then there is the issue of Kevin’s daughter and his visitation with her.  I feel guilty that I am unwilling to make the trek to Chicago every other weekend to get her since Kevin can’t.  People tell me “you shouldn’t have to”, “not your responsibility”.  But that doesn’t make me feel better.  I still feel guilty.  I feel bad that Lincoln doesn’t get to spend more time with “his Ashlynn” or Kevin spend more time with his daughter.  That I am responsible for that.  But I do have my hands full.  I work full time during the day, come home to a rambunctious 3 year old and a disabled husband with RSD and my next “job” of wife and mother kicks in.  My weekends are my time to spend with Lincoln and Kevin and do laundry and shop and clean and rest and relax, go to church with my sister and her kids.  I don’t want to spend the better part of my weekend training it back and forth to Chicago.  Not to mention having to deal with or have interaction with Kevin’s ex-wife or her husband in the process.  Kevin doesn’t want to deal with them, why would I.  But still feel guilty that Ashlynn can’t visit more often.

Even a birthday gift that Kevin’s mom bought me, made me feel guilty.  I felt bad that I even mentioned I wanted it when I saw it in the Sunday sales ad and when the on line purchase would cost more than buying it in the store, felt bad that Kevin’s mom had to go out in the cold, with a nasty cold/flu to get it for me.  I couldn’t even enjoy someone buying me something.  There is something seriously wrong with me.

There was a subject brought up on facebook about being “broke” but still having money to buy cigarettes and other luxuries.  I have been “broke” for so long, it struck a nerve with me.  Because I have bought cigarettes for Kevin and have bought books and toys for Lincoln.  It seems like when you are broke you are scrutinized for every little thing you buy or do.  That you don’t need it.  That you shouldn’t treat yourself or anyone.  Because I have been broke forever, I feel guilty every time I buy something.  Why should I feel guilt and someone with money not?  It is OK for them to buy things not needed, but not me.

Same goes for my guilt over Kevin and everything else I feel guilty about.  Why because I have had so much taken away, and have so little, why when I get something or do anything that would make any other normal person feel good, I feel guilty.  I want my child to understand Need VS Want, but I don’t want him to feel guilt all the time like I do.  I want him to enjoy life and everything that is given to him and every opportunity he gets.

Valentine's Day

Being Catholic I know there were Christian martyrs named Valentine.  One definition of martyr is a believer who is called to witness for their religious belief, and on account of the witness endures suffering and/or death.  Valentine is derived from Valens, which means worthy, strong and powerful.  This all describes my Kevin.  Worthy, Strong, Powerful and a martyr.  Kevin endures much suffering.  I believe, because of my faith, that God chose Kevin because he is worthy, strong, powerful and called to witness for his religious belief.  Because of Kevin’s RSD, I have become more spiritual and closer to God.  And I have seen Kevin become more too. 

I love Kevin very much and on Valentine’s Day we are supposed to express our love with cards, candy and flowers.  Those material things fade.  It is the day to day love that endures.  The expressions through actions mean more to me.  The hug, the kiss, the grasp of the hand, the smile, the wink.  I get those every day from Kevin even when he is in so much pain.  Kevin can’t go to the store and buy me things.  Sure he could order on line, but we don’t have the money.  I know it upsets him that he can’t do that anymore for me. Yes those gestures were well received by me in our early days of our relationship.  But our relationship has evolved.  It is easy to call in a flower delivery or pick up a card at the store.  The hard stuff is that day to day.  Kevin lets me know every day how much he loves me, with his smiles and winks, and hugs and kisses and that grasp of my hand in a store or in the car.  That is the real gift.  And he does this even through all his suffering. 

This blog entry to tell Kevin that I love him and that I recognize and appreciate all he does for me.  Those little things throughout the day, every day.  Not just on Valentine’s Day.  I thank God every day for bringing Kevin to me and me to Kevin.

I love you Kevin.

Happy Valentine’s Day

Multi Family Dwelling

I don’t know how Kevin’s mom and her husband do it.  I don’t know how they put up with us invading their home and not lose their minds.  Things have been running pretty smoothly since we had to move in with them on December 31^st.  I am very grateful to them for allowing us to live there and grateful for their seemingly unending patience. I am sure some days we are more tolerable than others.  We are on our 6^th week living there.  We have fallen into a routine so to speak.  But that routine was disrupted with the recent blizzard that caused us to be cooped up together for days and now this cold snap and Lincoln coming down with a nasty cold.  We are all finding our way within the routine even with the disruptions.  I seem to be struggling more with finding my way then the others in the house.  I miss having my own home.  I have my own space in the beautiful home we currently share with Kevin’s mom, Wendy and husband Jeff.  But it isn’t my home.  What a blessing it is to have your own home to yourself.  I feel bad that we have taken that away from Wendy and Jeff. 

I am feeling a disconnect with Kevin.  I work all day come home and retire to my own space.  Kevin has his space, Lincoln and I have our own space.  Own space and own home are two different things.  And I am really missing not having my own home.  Got a taste of it last Sunday when we had the house to ourselves.  The three of us were not on top of one another the entire time, but we were still together, alone.  Nothing in the background to distract us from us.  I miss that.  I am sure Wendy and Jeff miss that too.

One would say, a solution to this problem, for me getting out of this funk, would be to go out on a family outing just me, Kevin and Lincoln.  But with Kevin’s RSD we can’t always do that.  Our outings are dictated by his pain levels and tolerance.  This frigid weather is a killer for Kevin too.  So we are really limited and restricted.  Sure Lincoln and I could go somewhere, but that isn’t what I want.  I want it to be all three of us.  And besides with Lincoln’s cold this week, Lincoln and I can’t even do something outside of the house.  So I am getting stir crazy.

Our current living situation is temporary.  I know that.  But how I am feeling this week, I don’t want Wendy and Jeff to feel that way and if they do, I hope it isn’t for much longer.  That we can have our own home again soon.

Waiting.....

Kevin had 4 appointments yesterday with VA rating review doctors.  Kevin had to endure the 1-1/2 hour drive to North Chicago and back, 4 doctors poking and prodding him and x-ray techs man handling him.  We left the house at 6am and didn’t get home until 4pm.  I was wiped emotionally, physically and mentally.  I can’t imagine how Kevin felt.  He basically collapsed when we got home.  The strength and will power Kevin has to fight through the pain to get this done.  All the doctors concur, Kevin is 100% disabled and should be rated as such.  That is the problem.  The doctors know it, we know it, but the people at the VA Compensation and Pension department do whatever they want despite what we all know.

The neurologist Dr. Hazelrigg, that saw Kevin yesterday was the same one he saw back in June when we went through the first appeals process.  The doctor couldn’t believe we were back.  He thought for sure Kevin would have gotten his benefits from his review.  Not the case.  See the VA does not have a rating for RSD/CPRS so they rate it under whatever they feel like rating it.  And they will pick something that yields the lowest rating possible.  Like in Kevin’s case, they rated him 10% for partial paralysis.  Kevin has limited mobility, but he isn’t paralyzed.  So hence the 10%.  So we had to express to these doctors yesterday that they need to chart on every symptom Kevin has because of his RSD.  Swelling, pitting of skin, muscle spasms, redness, anxiety, and depression just to name a few.  He will be rated on each of those secondary diagnosis instead of being rated just for RSD.  This isn’t what we want or hoped for.  We hoped through the Chicago Tribune article and the VFW, the VA would be forced to have a rating schedule for RSD itself.  Not going to happen.  So every other Vet that ends up having RSD, will go through this same BS that Kevin had to.

I realize now that the doctors aren’t the ones totally at fault in the VA it is the red tape that binds their hands.  Though I will still go on record that North Chicago has some quack doctors on staff.  The Ortho doctor, Dr. Groves Kevin saw yesterday was off his rocker.  And I don't want to spoil my blog with a bunch of obscenities for Dr Shulmann in Neurology, who thank goodness was not the ratings doctor we saw yesterday.

The VA is so stupid.  If they would just give RSD a rating, like they do for Fibromyalgia (50%) or Migraines (40%), they would get by a hell of a lot cheaper on paying out benefits then forcing all these secondary diagnosis to get a rating. 

The thing is, I don’t even care about the money.  No amount of money is going to cure Kevin.  No amount of money is going to manage Kevin’s pain.  Sure money will take stress off of us, will allow us to outfit a home for his disability, will allow us to buy furniture to suit Kevin’s needs, but Kevin will still be in pain.

We want recognition for the disease and research for better treatment options.  But I guess no amount of money in the world will have that happen either.  Look at breast cancer and diabetes.  The billions of dollars raised and all the recognition for those diseases and they still haven’t come up with cures.

I guess this fighting the VA for benefits and fighting for SSDI has been a distraction.  It has been such a big part of our lives since September 2009.  When it is all said and done, will we be any better off?  Financially maybe.  But Kevin won’t be better off.  He will still suffer daily with pain.    

Policies and Procedures

Well we made our trek to the Milwaukee VA yesterday to get some help in getting Kevin’s pain under control.  It was to make up for the appointment we missed last week when Kevin ended up in the ER instead.  The appointment didn’t go as well as we had hoped.  Right out of the gate it seemed like the doctor had an attitude to us and was bothered to deal with us.  Kevin is in a wheelchair writhing in pain and the doctor shows no compassion.  Says “so I see you were in the ER last week”.  Yes, so what are you going to do about it? I thought to myself.  The doctor, who is Kevin’s primary care doctor, says, “I don’t know what I can do for you…I am not a pain specialist…the Pain Clinic would know more”  So Kevin asks the doctor to call the pain clinic.  And the doctor says “I can’t do that, I have to put a note in the system”.  We ask that he put the note in the system then.  But it wasn’t going to help us with our immediate problem of Kevin suffering in severe pain. 

See with the VA there are A LOT of policies and procedures.  In Kevin’s case, the Pain Clinic is the one that prescribes meds that work with the nervous system to alleviate nerve pain.  And there are procedures that need to be followed.  They have to try drugs on a list and keep going through that list in a specific order until they find one that works. So Kevin has run through the trials of Neurontin (Gabapentin), Topiramate (Topamax) and now Venlafaxine (Effexor) just to name a few.  And the trials aren’t for a few weeks.  Well unless you have a severe reaction to it like Kevin did with Topiramate, then the trial of the drug is stopped.  The doctors will put you on a low dosage and you try that for a few weeks, then they titrate you up in dosage.  So the trials of a drug that are having no positive affects on you could last for months.  In the meantime, Kevin is suffering with extreme pain.  But the pain clinic doesn’t prescribe pain meds (narcotics).  So what is a patient supposed to do while they are in a trial of a med prescribed by the Pain Clinic that has no positive affects?  According to the VA, go to your primary care doctor for pain meds.  So that is what we did, went to the primary care doctor to get more pain meds and we get the ” I don’t know what to do, I am not a pain specialist”.  Vicious circle.

In frustration, my water works start and I lose it with the doctor.  Kevin is suffering in pain stuck in the middle of this pissing match between the pain clinic and the primary care doctor of how to treat him.  The primary care did cave and prescribed more pain meds for Kevin.  They put him back on Fentanyl patches.  He was on them before he got his nerve stimulator implant.  And he was weaned off them by the pain clinic before his implant surgery.  Fentanyl is a nasty drug to get weaned off of.  It is VERY difficult to do.  Fentanyl patches are prescribed to people in Hospice.  So it is a double edged sword.  Kevin gets some relief from the Fentanyl, but we don’t want him on it.  And I am sure when we go to his next Pain Clinic appointment in March they will be less than thrilled that Kevin is back on them.  But what are we supposed to do.  Kevin can't live like he is living.  ER trips were becoming more frequent.  The pain outbreaks were getting more severe.  The RSD has spread to his arm and the doctors don’t have any sense of urgency to work on a resolution.  It is sick and inhumane, to let people suffer all because of policy and procedures.

Self Promotion

In these times of facebook and blogs, it has become self promotion.  Even my blog can be considered self promoting.  Look at me.  Look what I have gone through.  Look what I deal with.  Look how strong I am.  Look how special I am.  Feel sorry for me.  Pray for me.  Censoring myself, only putting out there what I want people to see.  I am ashamed of myself.   Just because I went through what I went through and came out of it OK, doesn’t make me any more special than anyone else.  I didn’t get through it alone.  God walked with me, holding my hand. 

Chatting with a good friend of mine today, I realized how I need to work on my inner harmony.  Work on my soul.  Not worry about who hears or sees, but worry about what I am saying or doing.  Because God hears and sees all.  I am not fooling him.

This blog entry is coming about because of something I said this weekend.  And how I was more worked up about who might have heard it, than actually saying it or doing it.  I was calling my church to inquire about a food pantry drop off.  I got their messaging service and was just about to leave a message when Lincoln turned the TV on full blast.  Well a bunch of expletives came out of my mouth and I yelled at him.  I then realized I still had my phone in my hand and panicked that my scream fest was recorded on my church’s answering machine.  And what I got upset about was not that I yelled at my child for no reason, or the words that came out of my mouth were bad, I was upset that my church would have heard me say it.  It shouldn’t matter who heard it, I shouldn’t have done it.  Because God hears and sees all.

Don’t beat myself up over that, right? I have a lot on my plate.  I am stressed.  Well that is no excuse.  Just because I am going through a lot does not give me a pass to say or do something I shouldn’t.  I needed to get knocked off my pedestal.  Because I deal with all I deal with and manage to get through it, I got a superiority complex.  Look at me.  Look how special I am.  Look how strong I am.  My blog was meant for RSD support and it turned into self promotion.  It wasn’t my intention.  Just became self consumed in all my problems.  I am sorry for that.

"Have you had suicidal thoughts?"

Have you had suicidal thoughts? "No..but the last couple of days I have been thinking, I have had enough".  That is the conversation I overheard last night in the emergency room between the doctor and my husband.  And it rocked me.  I lost it. Tears welling up, I turn away so no one can see me cry.

It was supposed to be just a doctor appt in Milwaukee to re-evaluate Kevin's pain meds.  Instead it became a 6 hour emergency room event.  Kevin had thrown up, lost bladder control and was blacking out on the way to Milwaukee, so calls to the doctors and we were told go directly to the ER.  They were scrambling when we got there trying to find a place to put Kevin, trying to do something to help him before a doctor was available to prescribe something for the pain.  We were put in a supply room.  So there were people coming and going in the room for supplies.  All looking at Kevin and giving that look of pity and saying "I will see how they are coming with those pain meds".  It is hard to watch your loved one suffer like that.  He was clenching his teeth so hard he chipped a tooth.

Finally the pain meds came.  His spasming leg subsided, his hands which were fists and his clenched jaw relaxed.  Ahh relief.  They were talking about admitting into the hospital.  We just wanted to go home.  So two hours go by, "how are you doing?" the nurse asks.  Kevin says "the pain is starting to get uncomfortable".  Off the nurse goes, comes back with a syringe and plunges it into his IV.  "I will check on you later".  Another hour goes by and same thing.  We just want to go home.  Finally they give the OK for us to leave.  A feeling of relief comes over me.  Then a feeling of worry.  Maybe he should have stayed.  What if something happens on the 1-1/2 hour drive home.

I was getting so tense driving home.  My neck and back were killing me.  The headache settles in.  I end up waking up with the same, so decide to call off work to decompress.  It is helping me mentally to be home with Kevin today.  He is doing much better than yesterday.  Relaxed as he can be in pain all day.

What a wild ride yesterday was.  To feel so helpless and scared.  Relying on people you don't even know anything about to take care of your loved one. I am just relieved we are home, safe and sound.

Waking up time

My son Lincoln wakes me up on the weekends by saying “it is waking up time mommy”.  Yesterday in church during the homily, I found my mind wandering to other things than what the gospel was about.  Lincoln looks up at me and says “it is waking up time”.  I know he said it because of the sun shining through the windows and he was fighting falling asleep, but it really spoke to me, that I need to wake up and focus and listen.

I have been away from my blog for awhile all caught up in my crazed life.  Kevin’s RSD, our recent move and the holidays.  I have had time to decompress and really reflect on my life and how fortunate I am.  God gave me the good things and the bad things so I could experience life fully.  It is hard to watch Kevin suffer in pain daily, but to be witness to his strength is amazing.  And I get the opportunity to show my strength and my support.  Those are blessings too.

In times of crisis people always come to help and offer prayers.  But when it is a chronic illness that goes on forever, never goes away, some people forget and fall away.  Then when you give a window into your life, like the Chicago Tribune article and video, some people pull away, not knowing what to say or do.  They treat you differently because they don’t want to upset you, or burden you with anything else because “you got enough going on”.  You become that elephant in the room.

It is waking up time for everyone in my life.  Kevin is disabled with RSD.  He will always be disabled.  It isn’t going away or going to get better.  Please don’t pull away or avoid or be afraid of what to say or do.  I need all of you in my life now more than ever.  I want to be there for you in your good times and in your bad.